Article From: Multiple Sclerosis Update
With the singleminded focus of a woman with a vision of a better world, the business acumen of a successful entrepreneur and the passion of a mother on a mission to cure her daughter of a rare, disabling disease, Victoria Jackson is changing the way research is conducted, diseases are cured and patients with rare disorders connect with each other. Jackson, along with her husband, Bill Guthy, founded The Guthy-Jackson Charitable Foundation (GJCF) in July 2008. Their mission? To fund research into the pathophysiology and biochemistry of Neuromyelitis Optica (NMO) Spectrum Disease that leads to disease prevention, development of clinical treatments, and ultimately, a cure for NMO. Their motivation? Their daughter, Ali, who was diagnosed with NMO in June of 2008 at the age of sixteen. The results thus far? A dramatic increase in funding of basic research and published papers on NMO, the development of a clinical research consortium to facilitate and streamline clinical studies, a partnership with Accelerated Cure Project (ACP) to build a repository of samples from people with NMO, a thriving Internet community for people affected by NMO to share information, and much, much more.
NMO is a demyelinating disease of the central nervous system, primarily affecting the optic nerve and spinal cord. Symptoms vary but often include eye pain, vision loss, weakness, and sometimes paralysis of the arms and legs. A rare disorder with an estimated prevalence of 1-2/100,000 worldwide, NMO generally follows an unpredictable course of relapses, separated by months or years, followed by partial recovery. There is currently no cure for NMO, but there are existing therapies with varying degrees of success to treat attacks, address symptoms, and prevent relapses.
When their daughter was diagnosed with NMO following a bout of eye pain and vision loss, Jackson and Guthy began their quest to understand the research that had been conducted and determine how close researchers were to a cure. What they found was both disheartening and motivating: not only was NMO a rare “orphan” disease, but very little research had been done. However, armed with significant financial resources, supported by their team of prestigious medical advisors, and determined to make an immediate difference, GJCF has been changing the face of NMO research since day one. By directly interacting with the few but extremely talented scientists studying NMO, funding their research, and fostering their collaboration with one another, GJCF is turning the orphan disease of NMO into a model for a new approach to research. An integral part of that model is the ACP Repository which houses an ever-growing number of samples from people with NMO that are being shared with the researchers doing the important work that will lead to a cure.
In addition to bringing together the researchers and the resources required to cure NMO, GJCF also brings together, both virtually and literally, those affected by it. From their informational website (https://guthyjacksonfoundation.org/), to their online support community, Spectrum, to the Patient Days the Foundation has sponsored for the last two years (where those with NMO and their caregivers can interact with each other and leading experts face-to-face), GJCF is fostering a sense of community, collaboration and change. They believe that collaboration is the key to determining a cure, and we at ACP, with our like-minded mission, could not agree more.
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